Transplant waiting list Q&A

[sandman]

Okay, I don't know all the details about this subject so I am just going to shoot from the hip.

From the information I have gathered so far about the transplant waiting list, the only things I am sure of is that each patient is placed on the waiting list according to priority status.  Other then that, I know very little other then there is no set time and date until you are called.

What else is there to know?

Moved to correct section "Transplant Stories"  Rerun - Moderator

[livecam]

Its not really priority status like with a heart or liver because there is dialysis for kidney disease so really it is first come first served with some exceptions.  Blood type and antigen match or tissue compatibility are big factors on the cadaver list.  The number of people already on the list in a particular area is another consideration.  In a big city like LA there are thousands of people waiting, in a smaller city the list is less so the wait will be shorter.  They generally like to get a donor kidney from the same area as the transplant center so with kidneys they aren't usually flying them all over the country but it can happen.  It takes some work just to get on the list.  The patient has to be stable on dialysis without disqualifying conditions such as major coronary artery disease, cancer, or being grossly overweight.  The patient can have no infections and no potential source of infections so dental health is super important.  A patient will be required to have any of those conditions taken care of prior to listing. Compliance is another major factor in getting on and staying on the list.  They will be looking at dialysis attendance, fluid gain compliance, a history of keeping medical appointments, and financial ability to cover costs such as medication after the transplant.  They are also looking at the patient's family support structure and they will do a psychological evaluation all to give them some idea that the patient will be in a position to take care of the new gift.  After all that is said and done it is a black hole.  You never know when to expect the call...someone here got a kidney two days after listing and other people have been waiting for many years.

[angieskidney]

Yes and if it is for a 2nd kidney (they do not last forever and my last one failed after 11 years) then there will be even more antigens to match.

As to what exactly antigens are, I don't know. I just know I have a lot of them now and have been waiting on the list off and on for 5 years now.

[Epoman]

Yes and if it is for a 2nd kidney (they do not last forever and my last one failed after 11 years) then there will be even more antigens to match.

As to what exactly antigens are, I don't know. I just know I have a lot of them now and have been waiting on the list off and on for 5 years now.

An antigen is a substance that stimulates an immune response, especially the production of antibodies. Antigens are usually proteins or polysaccharides, but can be any type of molecule, including small molecules (haptens) coupled to a carrier-protein.

http://en.wikipedia.org/wiki/Antigen

 

[angieskidney]

Thanks Epo! You are better than any search engine  

So from what I understand .. the more antigens the worse because they will fight off the new kidney??

[sandman]

I have heard Angie talk about how important good dental hygiene is for acceptance of kidney transplantation but she didn't get in to to much detail.  Why is dental hygiene so important?

[Epoman]

I have heard Angie talk about how important good dental hygiene is for acceptance of kidney transplantation but she didn't get in to to much detail.  Why is denial hygiene so important?

Taken from a website:

Your mouth is a potential source of infection because so many bacteria and fungi are normally present there. This is why we insist that you have a dental evaluation before your surgery. After transplant, it is important that you have regular checkups and maintain good dental hygiene. The routine dental care provided by your regular dentist will help to prevent infections and decrease the amount of gum overgrowth caused by cyclosporine.

When you plan to have dental work, even a check-up or cleaning, you must notify your dentist in advance that you have had a transplant and will require that antibiotics be given prior to the procedure. The reason for this is that bacteria may get into your bloodstream during the dental procedure; these bacteria can promote infection. This prescription can be obtained from your dentist or transplant cardiologist.

[Rerun]

Well, I'm not SURE here, but I don't think dental is a requirement anymore.  CRAZY I know, but I just went through the evaluation and I was waiting to get my teeth cleaned because it was such a HUGE deal 20 years ago.  They said "Oh, that doesn't matter anymore because when you get your transplant you will suck on this lozenge for the first few months that kill all the germs in your mouth." 

I'll see if I can find anything on-line to support that.

[angieskidney]

Well, I'm not SURE here, but I don't think dental is a requirement anymore.  CRAZY I know, but I just went through the evaluation and I was waiting to get my teeth cleaned because it was such a HUGE deal 20 years ago.  They said "Oh, that doesn't matter anymore because when you get your transplant you will suck on this lozenge for the first few months that kill all the germs in your mouth." 

I'll see if I can find anything on-line to support that.

I have never heard that! For my transplant workup just recently I still have to go to the dentist. I guess some places are still behind .. typical for Canada 

[MelissaJean]

I haven't had to go to the dentist  before evaluation.  Also, I don't take extra antibiotics before going to the dentist.  My docs and the dentist went back and forth on this, but for some reason decided against it.   

[sandman]

Well, I'm not SURE here, but I don't think dental is a requirement anymore.  CRAZY I know, but I just went through the evaluation and I was waiting to get my teeth cleaned because it was such a HUGE deal 20 years ago.  They said "Oh, that doesn't matter anymore because when you get your transplant you will suck on this lozenge for the first few months that kill all the germs in your mouth." 

I'll see if I can find anything on-line to support that.

I would be very interested in reading that rerun.

[angieskidney]

I haven't had to go to the dentist  before evaluation.  Also, I don't take extra antibiotics before going to the dentist.  My docs and the dentist went back and forth on this, but for some reason decided against it.   

I have had to take antibiotics for the last 16 years now ... 

[Rerun]

During my transplant and even now, I have to premedicate myself (antibiotics) before any dental work including basic cleaning.  This is because our immune system is down and our mouth is so dirty that if you bleed during a cleaning (I always do) it protects you from infection and THEIR BUTT from a law suit.

I'll call my transplant coordinator tomorrow and find out the information on Transplant evaluation and dental exams.

[Epoman]

During my transplant and even now, I have to premedicate myself (antibiotics) before any dental work including basic cleaning.  This is because our immune system is down and our mouth is so dirty that if you bleed during a cleaning (I always do) it protects you from infection and THEIR BUTT from a law suit.

I'll call my transplant coordinator tomorrow and find out the information on Transplant evaluation and dental exams.

Yes, please do I am personally interested in the correct answer.

[charee]

Here in Australia we have to a dental checkup before we can get on the list. I am currently about half way through all my tests, and the dentist is my next appointment. We have to go each year for a check up to stay on the list.

[sandman]

We have to go each year for a check up to stay on the list.

That does not sound unreasonable.

[Joe Paul]

In Pennsylvania, its a requirement too, a dental clearance, for the transplant work-up. My regular dentist sent me to an oral surgeon because of my diabetes, and because of being on dialysis. I did not have to take antibiotics till after my teeth were removed, and that was for 1 week. I had them removed so I would not have trouble later on with infection, I regret doing that now, hindsight is 20/20

[livecam]

On dialysis I was required to premedicate w/ 2 grams of Amoxicillin prior to dental work and now with the transplant it is the same.  I just have a standing prescription for it and my transplant status is in my dental records.  Other than that no big deal, I take a couple of pills an hour before going to the chair.  I have never had a problem with infection of any kind.

[angieskidney]

On dialysis I was required to premedicate w/ 2 grams of Amoxicillin prior to dental work and now with the transplant it is the same.  I just have a standing prescription for it and my transplant status is in my dental records.  Other than that no big deal, I take a couple of pills an hour before going to the chair.  I have never had a problem with infection of any kind.

same with me. The dentist has my file and calls in to the pharmacist automatically.

[mallory]

I haven't started dialysis yet, but I am close.  I've been thinking about a transplant, and I've asked my Nephrologist a few questions.  I have vasculitis already, so I'm already taking Prednisone and IV Cytoxan.  He told me I'd have to be off the immunosuppressants for at least 6 months to show that the vasculitis had stabilized before they could consider me for a transplant.  I figure I might as well try for a transplant because I'm already on the immunosuppressants because of the vasculitis, so I asked him what other things I needed to consider to be put on the waiting list.  He told me to have all of my health screenings done, including dental, and that I'd have to lose some weight (the Prednisone has made me gain quite a bit), then he said we could talk about it later.  Is it really hard to get on the list?  I'm 48, and I'll admit, the vasculitis has made me not really healthy, but, I'd at least like to consider it.  On the other hand, I don't want to get my hopes up if it's not realistic.

[quietscream]

     sorry for posting here forgot my wasy around will try to be here mpre i am doing ok

[jollor]

I just got done with my transplant evaluation recently and they never mentioned anything about dental checkup. I wonder if I should ask my doctor about this. I'm now on the transplant list too.

[okarol]

Jenna had to have annual dental and gynecology exams as part of her evaluation.
The lozenge she has to suck on is for thrush, which can develop due to the high volume of antibiotics she is now taking after the transplant.

[angieskidney]

Jenna had to have annual dental and gynecology exams as part of her evaluation.
The lozenge she has to suck on is for thrush, which can develop due to the high volume of antibiotics she is now taking after the transplant.

Lozenge? They had me take a shringe of banana tasting crap for the same thing. Nicostatin or something like that? I forget now. But ya .. seems thrush is a HUGE thing for transplant patients right afterwards. Also .. seems odd but I will say it anyways. I don't know if she is on Cyclosporine, but if she is, tell her not to kiss anyone right after taking it. lol

[livecam]

My transplant centers also required a yearly cardiac evaluation for all listed transplant patients.  I got somewhat familiar with both treadmill and adenosine stress tests.  Its all for good measure, they want to be sure a patient is going to survive the surgery.  On the day the call came they weren't sure if they would go ahead because I hadn't done my yearly stress test.  The call came on a Thursday, the test was scheduled for the following Tuesday.  We left for the transplant center not knowing if they would proceed...good thing they did!  Prior to transplant I didn't really have any dental problems but I told my dentist that I was prepping for a transplant so he removed all of my old composite fillings and replaced with non metallic materials.  That is probably a good thing to do renal issues or not.